Partaee!!!!!!!!!!!!

We had an awesome party for Michael on Saturday! My sisters and Chelsey were here to liven things up. Of course, all were invited and one by one they strolled or rolled in for the festivities. We started out with some Marvin Gaye on the boom box to get us in the party mood. As you all know Michael and us Samson women, we had to bust some moves! Lots of smiles and laughter. We probably spent 30 minutes alone just hitting balloons at each other. Michael thought it was hilarious when one would hit him in the head and crack up. Michael had a special Birthday hat that he proudly wore during the entire party. We played pin the features on Michael, and we think he was peeking when he took his turn (what a surprise)! We all sang before he blew out the candles, but he made a wish first. Interestingly enough, he knew what that meant and did so without telling what he wished for. I think the funniest thing that day was the cakecapades. Everyone got a large slice along with ice cream, and he ate his without wasting any time, then reached over and took another. When I had my back turned, he dug in with his own fork to take his third and last piece, because we whisked it away while his eyes followed it out of the room!
 It was so heartwarming to bring some joy and laughter to these young men who are facing a difficult recovery. Just wanted to thank the Edwards family for the gift they sent. Michael really enjoyed it. Also, Michael received his first memory from Logan Redden and it was so sweet. He listened to every word, and we were all teary eyed by the time it was finished. We are putting it a memory box for him to read later. Thank-you so much Logan. We are seeing improvements daily and are very encouraged. He couldn't be more loving and affectionate. I am so thankful for that. He is starting to remember his brother and sister's names. He is also starting outings off campus once a week. Post from the "Partaee Animals" I will post pics when Loren shows me how.

Out and About

Michael had his first off-site outing yesterday. Went to a local park and played basketball. It went great! Next week he is going to go out to a restaurant. This is huge. It is a step towards his homecoming, which we are all pumped about. I hesitate to guess at a timeline, but I think it is pretty safe to say that this Christmas will be a MUCH better one than last year.

Memories

It seems like I'm always asking for help, but I just got an idea, that should be easy to do. Heres the thing. Michael doesn't have hardly any memories, so he basically needs to start over. He really doesn't know who he is as a person. So that is where ya'll come in. If any friends and family would write to him with a memory of your own, something you did together, an event or experience you shared, maybe something he did for you that shows him his character, or places you've been. Anything that might help him recall who he is. I think it haunts him to not remember if he is a good guy or not. We can read these letters to him now, and down the line, he will be able to reread them himself. Make your memory letter simple to understand and short. This would be such an awesome thing for him to have. This is his address: Touchstone Neurorecovery Center; 9297 Wahrenberger Road; Conroe, Texas 77304-2441 He also can take phone calls anytime on the weekend between 9-9 or after 3:00 pm. on weekdays. The number is (936)788-7752 ext. 251 or ask for the Winsor House The code you may need to have if asked, is 17078 To his friends who have been unable to visit: this is something all of you can do! PLEASE help Michael remember who he is! Post by Mom

Reflections

Aaron and I got to spend this past weekend in Conroe with Michael. It was a great weekend, I will update you all about his progress, but I have been doing some reflecting this morning and want to share.

I have read two books in the past month about people who died, went to heaven, and were sent back. One was about a little boy "Heaven is for Real" and one about a grown man "90 Minutes in Heaven". Now, I know that some of you are rolling your eyes at this and thinking "Whatever, crazy talk." And that is ok. I believe it. I can tend to be the cynical type about certain things too, but these stories rang true to me and really, why would I choose to not believe? I am going to be (really) honest and tell you that there have been times over the last 9 months that I have wondered and asked God why He let Michael live. He has been through so much pain and his quality of life is so drastically changed, why did God send Brandon Hively into that apartment to rescue him? Brandon told me in the days after Michael got sick about that day. He felt a strong urge and almost a voice in his head saying "Get Michael out of there!" That is not an accident.

After spending some quality time with him, I am more than convinced that Michael is not done here. Maybe it is to provide inspiration to others, to cause his friends to reflect on their lives and love people better, maybe it is for our family to become closer. All of those things are true. I like to think it is because God has a miracle in store for Michael. Maybe not that he will magically wake up one day the old Michael Sluder, but that he will become someone different, stronger, more fully alive because of what he has experienced. Faith is a choice, and I choose to have faith in God to do something miraculous in Michael's life, and I choose to have faith in Michael's ability to overcome. Otherwise, he would be in heaven right now.

Ok, so here are some progress notes:
8 months ago, Michael's speech was almost pure gibberish. Today, he is speaking clearly 90% of the time. He can communicate his needs and wants, pour out affection on others, and have a full conversation.
8 months ago, Michael had lost a ridiculous amount of weight, had no idea what food was and wasn't, and had almost forgotten how to eat. Now he is putting away three square meals a day and they are having to limit him to that! He is healthy and strong physically.
2 months ago, Michael was violent, verbally abusive, and sexually inappropriate. His behavior is radically different today. He is loving, gentle, apologizing profusely for accidentally stepping on your toe. He is no longer inappropriate. (Although I am curious to see his reaction to some of his upcoming female visitors that are not his mom or sister.) I don't know if it is the medication change, the cytoxan, or just time to heal, but he is a pleasure to be around.
Michael knows Mom and Dad almost all the time and loves them SO much. He can identify Jordan and me in a picture.  He can put together complicated puzzles and do addition, subtraction, division, and multiplication in his head. He can read on about a second-grade level. He can write. He can make 3-point shot after 3-point shot. Get him started with "I said it's great... and he will finish "to be a Tennessee Vol!" I love that. Some things you do not forget.

Michael's short-term memory remains the greatest struggle and obstacle to coming home safely. We have to know that he will accept mom and dad as his parents, cooperate with them, and recognize that home is home. Pray for that.

I love my brother. I miss who he was, but I am grateful that he is still here with us and love who he is now too- sweet, smart, still handsome and still a fighter.  Just gotta keep the faith as we move forward.

Lets Party!

Michael's birthday is coming up on September 15, so my sisters and I are going to throw him a party at the Windsor House. If anyone would like to send him something for the special occasion, here is his address; Touchstone Neurorecovery Center 9297 Rahenberger Road Conroe, TX 77304-2441 [Windsor House] To Michael's friends, just use your imagination. Ya'll know what he likes. He is starting to look at all the posters and pictures in his room of friends and family, and is amazed that I know everyone's name. He may have to start over with friendships, so I hope that ya'll are up for that. He has to relearn so much, so lets all pray that the part of his brain that stores new information will heal. It may have to be a miracle, so PLEASE, everyone that believes in miracles....pray without ceasing! When his cousin, Seth was here, we bought him a cheap digital camera so he could take pictures. He is helping me make a book of everyday objects that he will be using, to memorize. Michael has made great improvements since he has been at this facility. They have pretty much changed his meds and between that and the cytoxan, things are getting better. The staff at Windsor House are very compassionate and great with Michael. They can see that he is a wonderful guy and I am so thankful for that! We also have several people coming out to give Mike and I a break, over the next couple months. So thank-you to Loren, Aaron, Jordan, Ashley, Chelsea, Maisie, Rajib, Aunt Lynda, and Aunt Peggy. We appreciate you so much! Post from Mom

Better

Rosi and I had a good visit with Michael today. We went to Barnes and Noble and loaded up on stuff we hope will help him to learn. A number of educational books, puzzles, and whatnot. Michael loves academics in general and is like a sponge now. He is very strong in math and Rosi has him reading basic stuff. We put together a puzzle tonight of the US, but he has a problem with abstract things as far as understanding what the map means. (Kinda like Rosi, - oops, did I say that?)

The rehab has made some significant changes in Michael's meds and the result has been great. He is much calmer now and more what I would call normal. He shows little signs of aggression, and in fact leans much more towards his loving side. He wants lots of hugs and affection, which we are glad to provide.

Michael is also showing some early signs of being able to remember some things. He remembered the first and last name of the tech staying with him today, which is a first. He is also beginning to remember family names. Repetition.

The only negative is that it is difficult for us to leave because he wants to go with us and gets emotional. We are hoping he will accept it and not beg us to leave. It is hard, but we are truthful and he will learn. That will be a sign we are closer to him being able to come home.

It also came a huge thunderstorm and rain here this evening. Its been awhile since we have seen that in Texas.

Baby steps

Well, we are on plan D for Michael and it is called Touchstone. He has been here for 2 weeks and after a rocky start appears to be settling in somewhat. Every time he is moved, it is very hard on him. I'm hoping that this Rehab has the staying power to be "The Place" that gets him back on the road to recovery. The staff are very friendly and can already see what kind of person Michael is. His aggression is beginning to decrease and at times he can be talked down when he is getting upset. The trigger is always his lack of understanding of where he is and wanting to go home. He seems to think that he has done something wrong and is being punished. We are constantly reassuring him that he is in a very good place and that he has not done anything wrong. What is different from before he started the cytoxan is that he will listen and take the info in [which is progress]. However, the problem is that he only remembers it for a couple of minutes. The short term loss is devastating. Until he knows Mike and I consistently, we cannot safely bring him home. Of course, we are hoping that the cytoxan will help with that issue, but only time will tell. My gut feeling is that because the HSV had simmered in his brain for a good 8 days before his friend, thank God, found him, it is the result of the HSV and not the NMDA.
I often wonder how Michael's boss feels about what his own personal lack of concern for Michael, has done to him and our family. It is probably a good thing I don't know who he is. Some of you may be saying, "Rosi sounds angry" and let me assure you, that I am. I watch my beautiful, bright son struggle every day to remember how old he is and how to find the restroom. He was recruited to go to work for this company and this is what he got from them. He could afford his own apartment for the first time in his life. He was so excited to be able to buy nice furniture of his own. Over these last 8 months, we've been paying it off for him so he could enjoy it again one day. I am going to change gears because I know I sound negative.
My nephew came this past weekend and had a great time with Michael! He really enjoys when family and friends spend time with him. I would like to encourage those friends of Michaels who haven't visited, to do so. This is not the time to abandon a friend in need. We have a 2 bedroom apartment and car here for anyone to use while they visit. Mike and I would like to spend more time in Nashville with family but we need someone to be here for the weekend. It is all down time and is boring and lonely for him if no one is here. Rajib is coming for the 2nd time this weekend so Mike and I can get home. He is so good with Michael. Thank you Rajib! Let me finish on a positive note. Michael is asking very good questions now that point to continual awareness which is a phase of healing. He leaned over to me at dinner and said "The bad thing about me is that I can't remember anyone's name."
Post from Mom

Conroe

Rosi and I moved our Dallas apartment stuff to an apartment in Conroe today. Not sure if it was the right thing to do, but at this point we make short term decisions. After we got our stuff inside, we went to see Michael and he appears to be doing very well. We aren't seeing too much aggitation and he is learning more each day. If his memory can decide to kick in it will be a game changer. Patience.

I think our final tally at Uno tonight was Michael 7, Rosi 7, and Dad 2. Not sure how that happened. I think they cheat. Rosi says she has a strategy but we didn't want to hear it.

We shot a bit of basketball today, too. Michael still has his touch. He was very complimentary of our efforts and kept saying how much he loved me and his mom. I think he realizes what his family means to him now.

The end of the days are tough, cause he wants to go 'home' with us. He took it very well tonight, though, and we said we would see him tomorrow. Also, his cousin Seth is coming in from Michigan for the weekend. They will have fun.

All Ok. We love our boy and he makes sure we know he loves us too.

The apartment is not too far from his rehab and is available to whomever wants to visit Michael. Just let us know.

Quick Update....

Michael has moved to his new rehab outside Houston (Touchstone). So far, so good. It was a huge relief to find a rehab that could take him, insurance accepted, and it is the type he needs. All big things that happened the day after the love bomb. Accident, I think not.

Mom is flying down today to meet Dad and spend some time with Michael this weekend, then they will both head back home (Gallatin) for a much-deserved and much-needed break.

Thank you all for your continued support.

Hope emerges

First, let me thank you all for the "LOVE BOMB". It was amazing and meant so much to all of us! I had no idea that such an organization existed, so thanks so much. The last few days the social worker, Mike, and Jordan have been at work finding an appropriate facility for Michael. He will be transferred to Touchstone in Conroe, TX Monday morning [yeah]. Today, he is getting the second round of Cytoxan [yeah]. I dare to hope! Please pray that this will be the place where he can heal and recover. Let me finish on a funny note. About a week into his stay at the hospital, they decided to put him in a vale bed[netting enclosing the bed]. Overnight he managed to systematically tear it down and then helped to carry it out of his room, saying, I think I did something bad. we kind of love that fight and determination in him! That is our "Michael Sluder". Post by Mom

Limbo (again)

Well, here we are again in limbo. There are quite a few folks searching for an answer as to where is the best place Michael can go, but this takes time. I expect it will take another week. Meanwhile he is in the hospital, which is not the best place for him.

Michael sometimes recognizes me/us and sometimes doesn't. When he doesn't, he will constantly ask if we know his name and how old he is. This is to convince himself that you know him and he is Ok to be with you. The doctor is familiar and gave this a long name. He says there are ways to try to cope with this and will get me some more information. That is what happened the other day when we brought Michael to our apartment. He could not recognize our faces and then didn't trust us, so he fled. It isn't unusual for him to be with me and then ask me if he can speak to his dad. I just say sure and go out in the hall and call his room. He is OK with my voice on the phone but just cannot put the face with it. Temporal lobe problems.

We are currently in the taking two steps backward phase. I have to only hope that this will all work out, but it is far from over.

Pops

Empty

That describes how we feel. We have been with Michael day after day now for 7 months. We felt like our constant love and support would help him heal and come back, but its just not enough. He needs a facility that understands brain injury and is equipped to handle explosive behavior at times without harming him. That has already been done to him. He needs room to roam and physical activity such as a gym or rec room to let off steam when he becomes confused and angry. If anyone reading this knows of a facility like this, no matter where it is please let us know. We are at our wits end and very exhausted. In fact, I'm driving home tomorrow with Jordan and our dogs. I need to regroup and spend time with my other family members and let the pros handle Michael. Mike and I have both agreed that it is time to detach and let go. If we keep going at this pace, it will kill us. I feel defeated and like I'm turning my back on Michael, but I don't know what else to do. Post by Mom

What the heck is happening?

So this has been the most ridiculous day in quite some time. I know that Jordan and I probably have our facebook friends very confused, so I am using this as a forum to just let everyone know what is going on.

Monday, Pate (rehab center) gave my parents a week to find a new place for Michael. He is more aggressive right now (ironically, they attribute that to the healing process and more awareness....) and has hurt some members of their staff.

This morning (Thursday), they called mom early and told her that they could no longer keep Michael safe and needed him gone today. My parents made plans to pick him up and we started the ball rolling towards bringing him home to Nashville. Lots of phone calls and plans being made.

Mom and Dad went to Pate and picked Michael up. Almost immediately after arriving at their apartment, he became belligerent (no short term memory and paranoia are issues, so he did not know who they were), hit mom and dad, escaped into the parking lot, caused a scene. Cops were called. This obviously is a very clear sign that Michael is not ready to come home. They are currently at the hospital where he will likely spend the weekend and the first part of next week while they make arrangements for a new rehab center. Dallas is tapped out, so it will be somewhere far away. (California is the only option I have heard as of right now).

This puts our family in three different places. Big bummer. It leaves me reflecting (again) how quickly our lives changed last December and how much pain and confusion this has caused. I am having to draw upon deep reserves in order to remain hopeful or positive.

That's the story for today. Thanks friends and family for caring.

Loren

Please help

I hav'nt posted in awhile because things are so difficult. Mike is certainly right about progress, but with it comes a huge downside. Pate is wanting to send Michael to another rehab because they cannot handle him when he becomes aggressive. I am so sad because I thought this was the perfect set-up for Michael to heal. I must admit I am angry as well; I feel like they are throwing in the towel before the cytoxan has a real chance to work. If he goes to another rehab it would be out of state and he would lose his neurologist here as well as us. I believe it will set him back again. So I struggle with the question, "Why does'nt anything go his way and where is God when we need him desparately?" If anyone reading this has an honest answer or real hope to offer me, I would love to hear from you. I feel like I am drowning in heartache and don't know how much longer I can do this. At times he knows I am his mom, but then he does'nt and asks who I am. When I tell him, he becomes very upset and at times angry. He says that I am not his mom....he knows who his mom is. I walk on eggshells with my own son. When he looks me in the eyes with his beautiful green eyes and does'nt know me, I can't even find words to describe what it does to me. I am trying so hard every day to stay strong for him and put on a smile when I see him, but I am dying inside a little more each day. I think all of you know how much Michael is loved and I can't imagine what our lives will be like without him. I do know that we can't bring him home until he can get back some memory. We would not be able to keep him safe much less at home. He would leave and there is no telling what would happen to him. Insurance is already hinting that they can't pay for rehab forever, as they put it. If they don't do right by Michael and something bad happens to him, God help them because I will hold them responsible. Post from Mom

Changes

We are seeing some positive changes in Michael's overall awareness. He is asking better questions and wants to know what has happened to him and why he is here. He also knows us much better now and is able to take in much more of what is going on around him now.
We began with putting together 24 piece puzzles made for toddlers and now he can go through a 300 piece puzzle fairly quickly. The therapists say he is making real progress in his speech and cognitive therapies.
His periods of aggitation seem to be more short lived nowadays. But he is a handfull at times.
This is all positive and keeps our hopes up. So he still has significant gaps to fill, especially in the language and memory areas, but we feel we are moving in the right direction.

Pops

Dang!

Rosi and I were getting an update from Michael's therapists on tuesday afternoon when we were informed Michael was throwing up and there was blood coming out with everything else, and they had called the EMT's. Our hearts sank again, and pretty soon we were headed for another trip to the ER. AArrgg.

I missed Michaels arrival at the ER but they figured out real fast he does not do well in closed places and is real strong for his 150 pounds. It took 8 of them to get him under control, but by the time I arrived he was doing OK. After that, it wasn't too bad. His neurologist worked with the hospital and had him admitted to the ICU, where they can keep him sedated with a drip. He slept well there last night.

Today Michael was scoped and the good news is that all his insides appear normal. In fact, the doctors cannot find anything really wrong and are not sure why he may have had blood coming out. Blood count is normal, etc. So as of tonight he is still sedated with a breathing tube inserted. The plan is to remove it tomorrow morning and unsedate him. Hopefully if all goes well we will return him to rehab tomorrow afternoon.

This is unfortunate because we feel Michael has been making real progress and these events always set him back. 2 steps forward, one back. Ramble some. He is beginning to ask insightful questions about what has happened to him and why is he here. He can take a 300 piece puzzle and conquer it very quickly. His desire to 'go home' is becoming stronger than ever and it just breaks out heart when we can't do it. We look forward to the day when we can, but that is a ways away. The biggest obstacle is still his lack of short term memory and language deficiencies.

Another sign of progress is that he is also a little paranoid. He will ask anyone around him 'What's my name?' I think he does it to make sure that whoever is around him knows who he is. Jordan was here last weekend and we tried to take a short 'family' trip with J, Michael, Rosi, and me to Sonic, but it was unsuccessful. He wasn't sure who we were so it scared him a bit to be leaving with us, he became aggitated and we had to go back. Maybe next week. Small steps.

Michael is about a week away from when his chemo may prove beneficial. We will see.

Pops

Hospital visit

Michael had a visit to the hospital and overnight stay to receive a treatment for his NMDA diagnosis. It is a form of chemo designed to tell the body to stop producing antibodies that are maybe interfering with his recovery. We are hopeful the treatment will be effective, but the earliest we will know anything is a couple of weeks or so. There are no guarantees, but the doctor and we have a pact not to leave anything off the table when it comes to his treatment. We are hopeful. I am not sure what to expect, but we just hope to see progress.

Other than that, Michael is progressing, but the gap is still huge between now and being able to come home. He is conversive and healthy, but has practically no ability to put names to objects and remember stuff. One thing approaching normal is that the girl patients at the rehab like Michael. They come by and ask for hugs and vie for his attention. He is mostly oblivious, but when they get his attention he will show some compassion.

Rosi and I miss everyone and hope you are all doing well. We are doing what we need to do for Michael, and right now that is what matters. We will catch up later.

Doing OK

Rosi and I see Michael all the time so it is difficult for us to see his progress. But if I think back and try to remember some of the very difficult times we had I can see we are in a much better position now. Michael is getting over his surgery and is handling himself much better nowadays. He is very healthy and strong and when we go out to visit we have a good time with him. The rehab has a rec center and usually we are the only ones in it so we play pool, ping pong and such and whoop and holler and have a good time. When we are in the big house all the patients are around and it is something to see. A couple of the gals have a crush on Michael and want his attention, but he is oblivious. Kinda funny to watch.

Michael likes to laugh now and cut up. He is very lovable and fun to be around. He speaks well and shows me glimpses of getting thru this. Don't get me wrong, there are still big gaps between where he is and normal, but he has come a long ways since this all began. If the chemo provides relief on his ability to communicate and process info, then I will be very hopeful. We will see.

Loss of memory is a big obstacle. Michael's motor skills are great. He can shoot pool or play ping pong like he always has. He does things that look very natural and were learned long ago. He also shows cognition and calculating skills when looking at the plays he should make in pool or playing uno or jenga, all of which he is very good at. But then we go into the bathroom and I will say lets brush our teeth, and I will have to show him what is the toothbrush and how to put the toothpaste on and how to brush his teeth. By the time we do it again he will have forgotten. That is what is puzzling to me, and it is only thru constant repetition that he learns some/many things.

They are also weaning him off of medications and he is doing well with that. His awareness is bringing a strong desire for him to "go home". Lord knows that is what all of us want, he is just not ready. Hopefully he will continue to progress and we can indeed take him home later this year.

Staying the course,
Pops

Waiting

This friday Michael sees the Dr. who performed the surgery and we are hoping he clears him for the Cytoxin treatments. We are very anxious for these to begin and see what happens. He is trying so hard to figure anything and everything out that is thrown his way. He is such a fighter! I can't imagine what it would be like to be in his skin for this long. We believe he has had this secondary encephalitis since about January 7th when his picc line was removed. I often find myself wondering where Michael would be if he was treated right away. What if an MRI was done before pulling the picc line? The most important thing I have learned thru all of this is...Advocate Advocate Advocate! If any of you go thru a medical crisis, these are some issues you should keep in mind. You can't ask enough questions. If you are not getting an acceptable answer, ask someone else. You not only have the right to ask, but the responsibility to your loved one. The medical professionals can be wrong. Push for the tests that you feel need to be performed and don't take no for an answer. OK, I'm off my soap box now. If any of Michael's friends are considering a visit, July is open other than the 8th-10th so far. He would love more visitors. This is the #(972)838-2602 ext. 2 or ask for West House where Michael lives if anyone wants to call. The best time to call during the week is between 4:00 and 8:oo and on weekends pretty much anytime. That is it for now. Thanks for keeping up. Post from Mom

Small steps forward

Even though Michael is back in the hospital from a complication from the surgery, I still feel hopeful today. Michael is making progress in spite of having nmda receptor encephalitis. That tells me he is a fighter! He had 2 friends visit this week. Landon and Ashley came to spend time with him and they had a great time! He loves it when friends visit. Thanks to those of you who have taken the time to do so. We really appreciate it. He has a wonderful sense of humor and is very affectionate. We are anxious for the treatment to start, hopefully in a couple of weeks. Please everyone pray for a good out come for him and no secondary infections. A word about Pate. It is a wonderful place and is staffed with folks who get it. I can tell they really care about Michael and we feel very good leaving him there. It has a family feeling and that move was definitely a good one. Michael has not had any injurfies since he came there. He even told me " I have friends here. " I loved it! That is it for now. Thanks for all the love and prayers. Mom